I have been a member for several years – at least 7-8 years+.
Currently we live in Hatch End, a small village in the London Borough of Harrow (North-West Greater London).
My wife – Divya and I have two daughters – Sayona who is 26 years old and Sayal who is 24 years old. Sayal has Partial Callosal agenesis and a Choroid Plexus Lipoma; the latter may not be related. Also, It is believed though not proven that this may have led to her global developmental delay to date.
We first met our Consultant Paediatric Neurologist – Dr M Pike at the Oxford Radcliffe hospital back in 1999 when Sayal was two and already had an MRI as a result of a cranial ultrasound in her first week after birth. Dr Pike was not very informative ( I don’t think he himself knew much about this condition) and didn’t think Sayal would make much progress in life. I remember he said that she would struggle to walk or talk !
We obviously took his words in disbelief but were determined to play a very active role in her global development. We used to live in Wokingham, Berks then where Sayal was born in 1996. We had a great team of community paediatricians, primary care doctors, social workers and education psychologists that provided us with a lot of support. We continued with our own research and remember Dr Rhonda Booth coming over to analyse Sayal for almost a whole day. We did all the necessary tests / therapy – Audiology, Genetics, Cranial, Speech & Language etc to help manage and understand her condition better.
As part of my job, I became an expatriate in Florida from 2001 to 2004. The whole family moved to Melbourne, Florida on the east coast. We were very lucky as my employer provided the full cover for any medical needs for all four of us. Divya made the most of this and we had several more tests and started so many more therapies – Cranial, SALT, OT, Horse-back riding, and also – Patterning – manipulation of limbs and head in a rhythmic fashion. The latter was learnt at an amazing institute – https://www.domaninternational.org/. We spent a lot of time with them and learnt a lot about the functioning of the brain – via a intensive course for parents from all over the world – this was in Philadelphia, USA.
Sayal has become a true love for us – her mannerisms, character, apologetic & magnanimous nature are a genuine inspiration for us – she is not disabled but DIFABLED; she has amazing different abilities which reminds us of the true value of life and our role in a family. We are truly blessed to have her.